What experiences do we share, and what barriers confront us? Is it possible to replace our contemporary, medicalized culture with something more representative of us as complete beings? Are we ready for a real sense of community yet?
I think so.

August 24, 2007

There can be no more empowering, liberating act, than to fully accept yourself. So why do we keep E. secret?

Whenever I say aloud that I am epileptic, there are always individuals wanting to talk with me about it. Some say they know someone with it, others tell me they used to have it, and quite rarely, someone will reciprocally identify as a person with E..

I really began to realize how commonplace it is for persons with E. to deny this part of themselves, after I quit making my own denials.

Perhaps, like me, one's parents taught you not to speak of it to others. Or, maybe it was some reaction from another person that taught you to admit "once having it", but to conclude your admission with "...but it's gone now" in order to make certain they would accept you as an equal.

Nobody told me that to keep secret my condition might create psychological problems, in addition to my epilepsy. And, I am certain that few of us have been so educated about E. and the detrimental effects denial has on a person's psyche.

I feel just a little cheated by the medical community for this because they knew about epilepsy denial as a common phenomena since 1956. In that year, Drs. Donn Tippett and Irving Pine studied the psychiatric extremes of epilepsy denial. Their published study acknowledged the familiar, epilepsy denial, as common in their patient populations. They presented their findings at a meeting of the Ohio Psychiatric Association, then published them in the Journal of Psychosomatic Medicine; the article is titled"Denial Mechanisms in Masked Epilepsy" (1957).

Denial is a well-known ego-defense mechanism in psychiatry. When one makes use of this psychological mechanism, they do so because, as Tippett and Pine point out, "It serves the ego by keeping from consciousness what the environment and reality would consider unacceptable... It is a common experience that epileptic patients avoid detection of their seizures on a conscious level by concealment and even lying."

Tippett and Pine continue by saying it is not unusual for epilepsy patients to react to their diagnosis with strong feelings of disgust, fear, shame, guilt, horror, a sense of personal disfigurement and self-loathing. In a nutshell, these are learned and perceived responses: the lessons one learns, from the doctors who treat you, from the family who cares for you and from the society surrounding you. If those around you react poorly to your diagnosis, you may feel you have something to hide from the rest of the world.

Since the mid-1950's, researchers have written even more on this issue. Now, it isn't simply that epileptics want to control disclosure of their E. to others, it has become a further refined research question, seeking to know who denies E. most often.

Who are the most frequent deniers?

To date, I have not discovered specific studies to tell us whether women or men deny E. more frequently. (That does not mean they haven't been done.)

Instead, there are many generalized studies, that look at gender and the action of denial in illness, violence and addiction. They suggest that dependent individuals are most likely to deny. For some scientists, the reasonable conclusions from such data are that women probably deny most often.

But then there is research that says the opposite.

Focused on women, and their specific coping skills in the face of illness, these other studies suggest that women are less likely to deny illness than are men, affected by the same illness. For example, between men and women who experience a first heart attack, women are most likely to accept the diagnosis, while men are most likely to fluff it off as an anomaly, or something that will never happen to them again.

Anecdotally, if one goes by the things epileptics talk about online, both gender groups are forced to face the ubiquitous disclosure crisis. Who hasn't agonized whether or not to fill in the employment application fully, or to tell someone you just met that you have epilepsy? The lingering question for the person with E. is whether to keep E. secret or to tell everyone that you have it.

But not telling can make you do crazy things!

I can recall, for example, a woman I once knew. She told my aunt that she was getting married for the second time. But she didn't look happy about it, the way engaged people are expected to look. When my aunt congratulated her, she said "Yeah, thanks." So my aunt asked her what was bothering her, why wasn't she happier? The woman answered: "Well, I suppose things will be just fine, until I have a seizure..."

Puzzled, my aunt and the woman were quiet for a few minutes. Then my aunt spoke up: "Haven't you told him yet?"

"No" the woman replied. "I'll just wait and when he sees me seize, he'll probably want to divorce me---just like my first husband did."

"You mean you didn't tell your first husband either?" my aunt said.

"No---I could never seem to find the right time."

There is also the story of the young man I knew, who refused to tell anyone where he worked that he had epilepsy---even after he rammed the company car into a 50-year old pine tree. When asked what happened, he said "I was trying to avoid the other car!" Later, the police report concluded that the man had been alone on the road when the accident occurred.

And what is one to think of Chief Justice Roberts? Instead of acting as a agent for the Common Good, he allowed an entire profession to obfuscate on his behalf. Pitiful...

In the end, I have to say I find the act of disclosing my E. helpful and empowering to more than myself. If more of us would take the chance, speak out and stand up for ourselves, we might find that the misinformation currently circulating about epilepsy is diminished. When more of us speak up and stop denying E., we will all have one less thing to fear in our lives.

August 19, 2007

Okay, here are the Rules to this particular game of tag:1. Let others know who tagged you2. Players start with 8 random facts about themselves3. Those who are tagged should post these rules and their 8 random facts4. Players should tag 8 other people and tell them they've been tagged.

I placed the Rules at the beginning because I didn't know how to play at first and I love games. However, I think I have a sort of inferiority complex, owing to my least favored status on the playground in elementary school, junior high school and high school. Both Seahorse (the Beauty Offensive) and Penny Richards (Disability Studies, Temple U.) have made me feel terrific because they said "I choose you".

Random Facts About Myself:

1. I am the self-declared world expert on redheads...one day, if I ever become a disciplined sort, I will write the book and it will be fabulous.

2. I am fascinated by statements of denial: I have a cousin in Mississippi who was born in Texas and grew up his entire life in California. He tells me when he passes away, not to mention the California part of his life---because he wants to be remembered as a Texan. Hmmm.

3. I love patchouli oil. Ever since my hippie days, I have been in love with this pungent parfum. I wear it very rarely, but it sparks my imagination...

4. I have proposed, since I was 12 years old, that I live to reach 100. Imagine the wonders one might observe along the way...

5. Lime green is my least favorite color, perhaps owing to the many attempts shop girls have made to put me into clothing of this hue. Just because my hair is red, does not mean I want to look like an American leprechaun.

6. I still believe one person can make a difference.

7. I love fairy tales and have been reading them since they were first read to me by a young Uncle of mine.

8. I am a folksinger. Protest songs, ballads, union organizing songs---you name it! I love the music, I love the folks who have made these expressions and believe it should be continued.

For lots of reasons, I choose each of you: perhaps because I want to know more of you, or it could be because I want others to know more of you, or because each of you has something witty or wonderful to add to this game of tag.

Play if you like, refuse if you would rather---just remember I wanted each of you on my team.

August 18, 2007

I can't tell you when I first knew for certain, but as long as I can remember, my personal symbol has been the moon. In my maternal line, acquiring a personal symbol is more usual than not. Four generations of us have sky symbols: mine is the moon, my mother's was a comet, her mother's was a lightening bolt, and her mother's was the North Star.

None of these women could recount the moment when they chose their symbol: they said it felt as if their symbols chose them. Perhaps they did.

For myself, I find it curious to both belong to the moon and to have E., since so much about epilepsy links to that soft and cyclical orb.

To the Greeks, Selene was Goddess of the Moon.Any well-behaved and cultured Greek understood that you "got epilepsy" by offending Selene. In her anger at your offense, she would lash out and strike you.

Seleniazesthai is the Greek verb meaningto be struck with epilepsy, according to the New Schaff-Herzog Encyclopedia of Religious Knowledge (1910). One cure to undo Selene's pique was mistletoe, picked without using a sickle or blade, during the time the moon is smallest in the sky. The mistletoe must not touch the ground or it would be rendered useless against the "falling sickness", for it would have fallen itself.The moon is routinely considered a female entity, owing to the monthly cycling of its phases. But, it would be a mistake not to mention that many cultures have regarded the moon as male. The moon of Babylon was male, and named Sin. And Sin had a direct connection with E.

As I understand it, one needed to be careful exiting one's house when the moon rose in the night sky. A minion of Sin might be waiting on the edge of the roof to pounce upon the unwary and if one was prey to such an attack, the residual evidence would be epilepsy.

Thus, it would be better not to be seen by the moon or his minion.

The connections between the moon and E. are not limited to ancient Babylon. Indeed, the magical and religious connections between the moon and illness can be located in a variety of human groups, across time and around the world.

Because it is true that many of us spring from culture groups that at one time or another made the connection between the moon and epilepsy, it is not unusual for us to encounter present-day individuals who still strongly argue for the moon's effect on persons with E.. Those who make such arguments are not limited to individuals with E. or their families. Health professionals, too, often believe in the moon's direct influence on the seizure patterns of their patients.

Senior Science Writer, Robert Roy Britt, in "Full Moon Not to Blame for Epileptic Seizures" explores the question with nationally known epilepsy specialist and researcher, Selim Benbadis, associate professor of neurology and neurosurgery at the University of South Florida's College of Medicine. "Patients were claiming their seizures were triggered or worsened by the Full Moon" and "even some health care professionals believe this, but it's never been scientifically tested" (Space.com, 26 May 2004).

Until now. Dr. Benbadis and his colleagues analyzed 770 seizures, recorded over three years at Tampa General Hospital. They sorted these medical records into classifications: epileptic seizures and other types. Of the epileptic seizures, 152 occurred during the Moon's Last Quarter and 94 when the Moon was full. Britt quotes Dr. Benbadis on his recent findings, now published in the journal Epilepsy & Behavior:

Contrary to the myth, epileptic seizures are not more common during a Full Moon. In fact, we found the numbers of epileptic seizures were lowest during the Full Moon and highest in the Moon's Last Quarter... But, myths die hard---Some people still seem to like poetic, mysterious and irrational explanations for puzzling diseases like epilepsy.

Old time explanations and cures for E. will probably remain with us for a time. It is even possible to suggest that people will create new lore as we move toward the future. Until the E. community insists that everyone have accurate knowledge of our condition, people without good information about E. will use their own logic to make up explanations and treatments for us.

I just can't think of a time, historically, when that has been good for epileptics.

August 10, 2007

Sometimes a little laugh can unite us. I wish it were my own idea to write the following lists, but it isn't. Instead, it was prompted at the invitation of David Gayes, Growing Up With A Disability, for the Disability Blog Carnival. The Carnival has been a unifying activity among lots of disabled folks and I hope you will read, via David's blog, some of what is written there. (You can double-click the title of this post to get to his blog...)

The most recent "theme" for the Carnival has to do with Top Ten lists. Both of mine relate to E., of course, and I truely hope you enjoy them. The first has to do with the things folks have said to me over the years about my epilepsy and about me. See how many of these you can relate to:

Top Ten Dumbest Things People Have Said to Me about My Epilepsy:

10. I can’t catch this from you, can I?

9. I hope you never have a child---what if you were holding the baby and had a seizure? You could drop it...

8. You’ll outgrow it.

7. Epilepsy’s not so bad---at least you can’t die from it!

6. OK---so you have epilepsy: you take your pills and it goes away!

5. You have epilepsy so you must be retarded.

4. Don’t worry about having a fit---I’ll just shove something between your teeth and you will be fine!

3. You can’t work here: you’d frighten the others too badly if you had a fit!

2. I can’t rent to you---I'd love to if it were just up to me, but if I do my insurance rates would go up if you had a fit!

1. Of course epilepsy has nothing to do with willpower---but you could try a little harder to stop seizing, couldn’t you?

But the general population isn't the whole source for dumb or arrogant commentary on E.---if I had a nickel for every time a doctor or nurse made a dumb comment, I'd be independently wealthy by now. But, here are ten of them:

The Top Ten Dumbest Things Doctors Have Said About My Epilepsy:

10. You’ll probably outgrow it---others have.

9. Your mother was likely frightened by something while she was pregnant with you.

8. Are you Catholic? An exorcism might work.

7. We’ll just keep switching your pills until we find the right ones for you to take.

August 6, 2007

There is an apprehension created by an active mind in the dead of night: a surety of one’s power to grasp the meanings and significance of things. One may experience a genuine sense of beneficent resignation to the past and acceptance of the future, in spite of any unrelenting anxieties or expectations.

It is the time my thoughts are the most active, to be sure.

At that late, silent time, I feel the doors of memory open easily, even though they may be tightly shut at other times. These are the hours I feel I understand myself in relationship to my hopes and aspirations: I see the juxtaposition between who I was once and who I have become, and I am contented by that vision.

One is free to consider all sorts of things in the dead of night and give no special weight to any one of them. It can be a time for unrestrained, intellectual play and it sometimes yields useful perspective on important questions like "why am I awake at four a.m.?"

Am I depressed about something? Is this insomnia? Am I suicidal?

While I have never seen a discussion about how long one has to be awake in the night to qualify as an insomniac (I am awake 15-45 minutes at a time, rather than for hours); I suppose it could be a possible classification for my sleepless behavior. My thoughts at that hour do seem to be directed toward problem solving: can I find a snack without waking my spouse?

Still, I can't say that I ever consider killing myself in that short, snack-seeking period. I guess I am just too preoccupied with hunting and gathering. But, I am curious about this wakefulness, so I read.

I read scientific writing on the connection between E. and depression. I find, inevitably, these papers address E. and depression in terms of comparative suicide rates between the majority population and the E. population. Conclusions are consistently drawn to show persons with E. are at least 5 times more likely to suicide than the majority.

But these conclusions seem flawed.

Folks of the E. community will chat about everything, and their most personal and private issues can become threads for conversation in cyberspace. Insomnia is certainly a well-explored topic. But I have yet to chat, email, etc., with members of our community who want to discuss suicide or thoughts of it. For a group researchers say are five times more interested in suicide than the general population, our community is strangely closed-mouth on the subject.

A reluctance to discuss suicide should come as no real surprise to anyone though. It may be because of a kind of confusion over what draws one to its consideration, as well as to the act itself.

Our community is all too practiced in the art of selective disclosure. We are experienced with the potential consequences to us as individuals if we make certain statements aloud. So dismissing suicide as a possible topic for conversation seems reasonable, even prudent.

Just what would reactions be to us if we began to fling personal admissions concerning thoughts of suicide about? How would our families react? Our caregivers? Wouldn't it change how people come to see us and our condition? What kinds of repercussions might we experience?

Surely the majority population feels a similar discomfort.

My own discomfort with the subject of suicide has less to do with any personal thoughts about it and more to do with the fact that it is more and more often attributed as a feature of epilepsy. A new symptom. It makes me question how reliable such studies really are. Are persons with epilepsy inclined to kill themselves at rates five times greater than the national average? If we are, shouldn't we address this? I'll take a stab at it.

As I see it, one may divide those who contemplate and/or act in favor of suicide into three groups: the compulsive, the depressives and the morbid thinkers.

The compulsives are mentally ill in a profound way. Depressives can be assisted with interventions of talk and drug therapies. Morbid thinkers, I believe, include many persons with E. because we are socially removed and used to keeping profound secrets from others about our health and well-being; and we take the kinds of powerful drugs that increase our vulnerability to such thoughts.

I read a clever description of the E. experience once: seizure, side-effects, stigma. This sums up neatly the three major areas of difficulty people with E. have to work with every day. Those of us with E., recognize the meaning of that slogan immediately; those outside our community, don't.

I take drugs with my E. and the drugs reduce the severity of my seizures; they do not eliminate them. So I cope with my seizures. I also cope with drug side effects. These side effects, apparently, will also never go away. And I live with stigma that makes people afraid of me. So I am determined to push back against things that will in any way disinform others about epilepsy or those of us with it.

The artifacts of prescriptive living intersect in some strange ways. One common way acts to give many of us insomnia. Because control over E. heavily depends on finding sufficient rest to help avoid seizing, E. becomes more difficult to control and certainly less reasonable to bear, when insomnia is in play.

Drug-induced insomnia may have the effect of rendering us vulnerable to an elevated suicide risk. Isn't it logical to think that if we are suicidally inclined, that it may be a drug-induced state, and not necessarily a new symptom?

Certainly, the drugs we use to help us with E. are important to us and have improved many of our lives. The scientific community needs to more openly distinguish between resident suicidal, depressive or insomnial tendencies and those that are drug-induced. If not, persons with E. will endure yet another layer of stigma, and I'd say our burden is already heavy enough.